AWAITING DIAGNOSIS AFTER MDT

FormerMember
FormerMember
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PLEASE HELP .. Over the past 3 weeks i've had a 2WW gasostrophy showing 2 lesions on my stomach wall which they biopsied .. I then had a C.T scan also on a 2WW .. I then received a letter saying they had my biopsy back and it was inconclusive but that they thought is wise to repeat as a matter of urgency with an endoscopy this time tho .. that they had my C.T results and it showed lesions on my liver and my Thymus was very prominent .. so they was sending me for a URGENT LIVER MIR WITH HEPATALIBARY CONTRAST and then they would discuss my case at UPPER GI MDT as soon as those results were back .. so they came back last Friday and my meeting was today .. but I haven't actually been told a diagnosis yet .. is that normal .. as I've read the steps of a MDT process and it states a diagnosis and then the MDT TEAM meet to discuss treatments.. They haven't give me a diagnosis yet .. I had all of those test done in the space of 15 working days too so they haven't hung about .. I'm just wondering if when they call tomorrow they will tell me a diagnosis over the phone or will I just have to go to an outpatient appointment.. I'm sorry but I didn't even know what a MDT was until it was in my letter so I looked it up on the NHS website and here I am lol .. id be so grateful for any advice .. I know that non cancerous lesions don't matasise ..and rarely have symptoms .. so the fact I've lost ALOT of weight and right now weigh just 42kg .. I'm 38 and 5ft 1inches and my BMI now is 17.4 already
:-( I've been eating only 2 -3 mouthfuls of food a day .. I'm not hungry at all but when I am .. as soon as anything literally touches my tongue I feel full .. I have abdominal and back pain .. I have pains in my arms and radiates into my shoulders .. my veins are so visable too it's vile Cry I'm just struggling to cope purely because I just want someone to clarify what I read on the NHS about the possibility of any person having lesions on so many places and it NOT be cancer .. or treated as auch therapy wise .. plus i have numerous symptoms .. if anyone has had the same experience with multiple lesions being found .. especially all at once .. then please get in touch Cry I'm a mom of 4 and I just became a nanny too so I have alot to fight for .. 

<span;>The only point of contact I have is the Consultants Secretary .. apparently the last who called was filling in for her today and said she couldn't tell me anything except my MDT was today .. and I've literally only Google's on machmilllan and NHS websites .. and it was mainly to inform myself of what things was and meant in my letters .. especially the things they type in BOLD lettering lol .. I think it's more because when I call my GP.. all she s done is say she doesn't know anything yet.. and that I wasn't to take ANY ibuprofen type products .. she gave me 50mg tramadol four times a day for pain .. but I'm only needing 2 a day as they are strong omg lol .. and shes taken me off stomach acid tablets and replaces with soluble Losec ones .. I think that s why I'm so distressed it's not so much fear of having cancer.. it's more to clarify my thoughts .. I wanna face this head on .. and at the moment I feel I'm being expected to pretend I'm ok ..

 I WILL NOT GIVE UP IF I AM REALLY POORLY 100MuscleSob x

  • Hi , the waiting is often the worst part, so I’m sorry to hear you are in that at the moment, but at least it sounds like just a little bit longer to hear what your diagnosis is and what your treatment is. I remember when I was waiting for a diagnosis (5 years ago) I was told not to google, and I’m a big rule follower so I didn’t, I am glad for that as my diagnosis wasn’t the cancer type that was mentioned as a potential, unfortunately it was still cancer but it meant a different team would be looking after me than the Macmillan nurse who came to see me while I was in hospital. If you do have cancer the primary type of cancer dictates what the treatment is and a multidisciplinary team can call on experts from different areas to give their advice. I recently had an MRI to my liver as a CT scan showed a lesion, the MRI could look at it in more detail, the MRI actually showed it was nothing of concern. If there is a person who had tests and didn’t have a cancer diagnosis they most likely will not be here on the site to give you their positive story. 

    With a cancer diagnosis, (or what ever may be diagnosed for you) there may be a lot of periods when you are waiting for results or for treatment to start and then to find out if treatment is affective so I concentrated on that aspect the dealing with uncertainty rather than trying to second guess what I would be told. I find it easier to cope in limbo when I have a date when that limbo might end, and I can plan in distractions to keep me busy, and bring a bit of joy. 

    You asked if they would tell you on the phone or wether you would have an appointment, I don’t know the answer to that, in these covid times they may tell you by a phone appointment, they will want to know you are in a place with someone to support you and somewhere you can talk. A diagnosis can be a shock even if you are expecting it. You sound like you want to have some control over things so you might want to concentrate on what questions to ask when they do phone you, I’m saying this from personal experience as I wasn’t prepared and just laughed in disbelief at my diagnosis concentrating on no that can’t be right rather than ok what happens next, and how can I help myself feel better. 

    You have also touched on another subject of talking about things how important that is for you, even putting things down in writing helps me, it gets things out of my head and brings a bit of clarity so I hope just typing here helps. You could also ring the Macmillan support line 0808 808 0000 and they will be a listening ear, or perhaps help with the eating aspect that you have mentioned, the lines open from 8am to 8pm. I found the information and support pages on talking about cancer and on emotional support really helpful, and the forum here helpful to find how people ahead of me with the same diagnosis were coping. 

    I hope you haven’t got much longer to wait for a bit more clarity and then perhaps I can help for suggesting any further groups to join on here. Or you could browse the group button for cancer experiences or types, or look at the ask an expert section. 

    Take care

    Take care KT

  • FormerMember
    FormerMember in reply to KTatHome

    Thankyou spook much for your reply .. It's helped alot .. I'm still waiting but I'm sure it won't be long now xxx

  • FormerMember
    FormerMember in reply to KTatHome

    Thankyou so much ! For contacting me.. no I haven't been told anything really .. the only reason I knew my MDT was on Monday was because I called the hospital and got the Consultants Secretaries number .. she was very vague .. I called again yesterday afternoon as I didn't receive a call that day and I was just told by the Secretary that they won't be the people to talk to now .. that it's down to the MDT department to call u .. she said but u will also be called by a specialist nurse too .. but it's definitely not us .. your consultant is on holiday now this week also but that shouldn't delay them calling as your MDT was held yesterday ( meaning monday) .. So I'm no further in knowing tbh .. with regards to my weight .. they gave me some Compact shakes .. I'm supposed to mix it with 50 mil of milk three times a day but I've not even been managing that now for weeks .. I struggle even one a day and I'm just scared that IF I DO need treatments and my weight and BMI is already so low ... shouldn't they really put me on some sort of drip or whatever now before that happens ?? 

  • Just checking up on how you got on and whether you now have a diagnosis and a treatment plan.